thenmama

My approach when our kids have explosions or other behavioral problems, is to first take a step back from the details or particulars of the issue, situation, or incident(s) and from there try to assess what's going on in a fundamental/big picture sort of way. I always assume the behavior has a reason. Sometimes just stepping back and seeing the situation will illuminate the reason and I know exactly what needs to be done to address it or avoid future occurrences. Avoidance is a key strategy re: explosions. If I know what is likely to trigger explosions, I can problem solve them with my child (or without if necessary) to try to avoid future explosions. But, that's not always possible and triggers are not always predictable so it's only one part of the overall plan for blast containment. I find it helps to discuss these things, and maybe even come up with a "meltdown" plan when the child is calm. Once the meltdown's in progress, it's too late and it's probably best to let it ride out before trying to address the issue that kicked it off or the behavior that resulted, with your child. Now, I don't mean you shouldn't try to defuse the immediate situation-- by all means, do! You've gotten some good tips about that already. Is your child's PANDAS well controlled or is there a chance he's either flaring or has some underlying infections? My ds was in a cycle of improving dramatically, then backsliding and exploding again. Further investigation revealed some chronic infection issues and some marked immune deficiencies. He can't maintain the gains because he can't clear the infections. We're en route to IVIG and then T&A (he's got very large tonsils and with all of his immune deficiencies his tonsils are like hotels for bacteria). His explosions go away completely when his PANDAS treatment is working. When he backslides, that's usually our first sign. His explosions are OCD-related (he can't handle things going wrong or being different than he expects or plans, mistakes are terrible, computer errors, etc. all set him off). My ds's biggest OCD fear is actually talking about his OCD & fears, which makes my job significantly harder when I try to problem solve it or do erp with him. We have to start erp with that until we make enough headway he's able to start providing info about the rest. I don't know if that is relevant, but thought I'd mention it in case your son is having worries he's unable to express that are leading to the meltdowns.

Same thing here-- ds has had recurrent issues with these rashes for years and they've never responded to typical diaper rash remedies, or treatments for yeasts. But, he was sick a lot and had frequent abx and when they would blister I had Mupirocin to out on them so they would come and go but I never realized it was bacterial. That whole hindsight thing, right? Becoming a PANS parent has made me realize how little I knew when my kiddos were very little. It wasn't until this year that I learned it was strep. And guess when the rash returned (with a spike in his OCD, etc.)? A day or two before his first visit with our PANDAS doc-- talk about timing! I finally learned what the rash really was and it made confirming the strep with the flare quite easy for the doc.

What I saw matches the info you've posted-- and clearly these girls were born prior to 2008... This is from the NY State DOH website: Pneumococcal conjugate vaccine is recommended for all children less than 24 months old and for children between 24 and 59 months old who are at high risk of disease. Persons who are 2 years and older and at high risk for disease (e.g., sickle cell disease, HIV infection, or other conditions that weaken the immune system) should also receive PPSV23. Adults aged 19-64 years who have asthma or who smoke should receive a single dose of PPSV23. All adults should be vaccinated with PPSV23 at age 65 years. Those who received PPSV23 before age 65 for any indication should receive another dose of the vaccine at age 65 or later if at least 5 years have passed since their previous dose. Those who receive PPSV23 at or after age 65 should receive only a single dose. In New York State, pneumococcal conjugate vaccine is required for pre-kindergarten attendance for children born on or after 1/1/08.

Ds has recurrent perianal strep-- it looks like a red ring right around the anus, usually a sharp demarcation around it, then there may be an area that is lighter or different in color or not as affected, possibly followed by more redness again, or the appearance of curved red markings/lines-- almost like parenthesis, and possibly more redness/irritation and/or spots, bumps, blisters. As undesirable as it may be-- there are examples of the rash online and you could do a Google image search. I've found that image searching for rashes generally bring up the more extreme examples- so I wouldn't rule it out based only on that. Most peds can identify it on sight b/c it's a pretty unique rash, and you can have them try to culture it for you. HTH

Hi socalmom, Sorry for your ds, and you, how awful and frightening! I do have 2 gagger-chokers and it seems the reasons for it vary a bit, but are all or almost all PANS-related. Sometimes it's clearly the OCD; they both have food-related OCD issues at times in exacerbations. It can also be caused by sensory sensitivity-- the same way the might become hypersensitive to tags, seams, sounds, etc. them when they are in a flare, it can be certain textures or something about the way the food feels. Then there's the neurological aspect and how the inflammation impacts oral motor function. My ds has dysarthria (impaired articulation-in his case due to hypotonia-- low muscle tone), and a handful of others such as: oral apraxia (the oral motor planning), dysphagia at times, etc. Also, while researching in advance of ds's upcoming tonsillectomy I read that enlarged tonsils and adenoids can cause some gagging, choking, and saliva pooling. So with my ds it could be either the PANS, his big tonsils and adenoids, or a combo of both. As for allergies, my feeling is it's always worth investigating. For my kiddos these issues are clearly linked to their illnesses and exacerbations, but allergies are also immune system activators... All information is good-- even if only to rule some things out. Do you have a PANDAS doc you can consult or see about this?

Oops: here's a link to the vaxtruth article.

Interrupting the great discussion to revisit the more contentious item discussed earlier in this thread... The vaxtruth.org site now has a more recent "article" posted by Marcella on 2/7, that presents misinformation as fact and in which she again uses PANS and LeRoy to promote her antivax agenda. She again claims PANS is a result of Vax injury. * I realize us many of us believe vax may have been responsible for either triggering the initial PANS episode or subsequent exacerbations in our children, and based on what we've seen and what we may have been told by our docs for our own children, it seems likely that vax would not be advisable for a number of kids with PANS. But, since not ALL kids with PANS react to vax, not all kids who have PANS have had vax, etc. etc. And since there is currently no scientific evidence to support her claims and it creates a problem in the general perception of what PANS actually is... Well, you know where I'm going so I won't beat the poor dead horse on that front. In this more recent "article" she lays out a rather desultory connect-the-dots case for a vax injury cover-up conspiracy re: LeRoy, PANS, vax, Mechtler, Merck, and the NY DOH (which then proceeds to defeat itself). Here's the gist (my summary/bits of commentary, her thesis): Mechtler is paid by Merck. Merck makes pneumovax. Mechtler, b/c of Merck, has a vested interest in vax not being the cause in LeRoy. Pneumovax contains strep. pneumoniae. Dr T dx'd the LeRoy girls with PANDAS (she leaves out the -like illness). PANDAS is caused by Strep (also leaves out the MycoP and other causes and falsely claims the girls Dr T saw were all pos. for strep). Pneumovax contains strep (oh. yes. she. did.). NY State requires pneumovax for all school-age kids (unless there's religious or medical exemption) even though the CDC, WHO and Merck itself only recommend it for certain at-risk populations. The girls' illness is likely due to strep exposure via the mandatory pneumovax. This is why NY State wants no outside interference. This is why Mechtler and NY State don't want it to be PANDAS. And... here's where it delivers itself a final, fatal blow... If it turns out to be PANDAS this would point blame where it really belongs, which is actually not Merck, but the NY DOH (huh? With Merck off the hook Mechtler's vested interest is what?). The "article" is just riddled with blatant untruths, as is everything I've read about PANDAS and LeRoy on her site. I'm troubled by the way she promotes falsehood as fact, and exploits PANDAS and the poor kids in LeRoy, which could be bad for the PANS community and individual kids and their families. Deliberately misleading people to convince them of something one wants them to believe, even if the facts are quite different and you'll have to throw others under the bus to do it, isn't really any different than what she accuses the NYDOH, pharmaceutical industry, doctors, et al. of doing with regard to vaccinations and LeRoy. Beyond these issues (and more) that I have with the article's content and regarding her motives and actions in general, there is something else I noted that (if it is the case) I find even more unsettling... In this post, Marcella also mentions receiving messages from PANDAS parents about their child's sudden onset of tics and OCD following the pneumo vaccines. She goes on to claim, "Today I received a message forwarded to me from a parent of one such child who is being treated with IVIG therapy. The mother of this child reports that her child’s physician routinely runs labs, testing the titers of the strains of strep contained in the vaccine, with the result that 99% of his patients with PANDAS exhibit vaccine-failure. This means there is an inappropriate immune response to the antigens (in this case multiple strains of streptococcus) even though the children have been vaccinated. This suggests that there is something about this subset of children that causes their immune systems to act differently than most children do when they receive this vaccine. This also suggests that when they are injected with the multiple strains of strep bacteria, if their immune systems do not fight it off as expected, this may be the source of their infections, and of their neurological response to the bacteria." In our discussion threads (where her site has been mentioned and criticized), a member brings up Dr. B's PANDAS s. pneumo titer failure estimate of 99%. If that member was not the one to have emailed her about this, then it seems like she was either sent the post content by someone in our forum community, or perhaps she's visiting this forum-- reading, poaching, and spinning for her own purposes. In looking over her site, I also realized that her article pointing to Mechtler's big pharma payouts went up right after I posted that same info to this forum, and her article provides the same link to the info that was included in my post (there are multiple individual links that yield similar info on the doc, so I found it curious that she chose that one-- especially since that link only shows one year and there are pages with more recent info available). Perhaps it's just a coincidence and it occurred to her to do the same research on the same site and it was also coincidence that she published it later on that same day that I'd made my post and chose to link the same page. Our stars aligned that day. I honestly don't care if her piece was prompted by the info in my post-- I'm happy to see Mechtler's sleaze factor to outed to a wider audience. What I do care about, though, is whether she, or someone among us, is abusing the good faith of this forum community and using what transpires here in a manner that could do the PANDAS community at large a great disservice. I know it is a public forum and anyone can read or join, but I care deeply about PANDAS and those whose lives are affected by it, and this forum community is important to me. While I would have been inclined to support her, I'm now just outraged.

Ds's immunologist told me that the pneumococcal is conjugated b/c, as mentioned, young children cannot mount the response to the polysaccharide. She said by his age, 7, ds should be able to respond to the polysach. This is apparently why they'll often try re-vaxing when labs reveal failed pneumo titers-- they'll try the "grown up" version and re-test the 14 titers to see if they respond once they've hit the age they should be able to. I know this was already discussed re: pneumovax, but thought I'd mention what I'd been told by our immunologist in the context of treating our ds, since what they do in practice seems to match the info you've provided.

Maybe they're not saying it for those who are aware of what it implies... could be they're just tossing out jargon hoping it'll fly over the heads of the general viewing audience and seem too sophisticated or confusing for the lay person to understand. Essentially using the (appearance of) "specialized knowledge" to make the audience feel inferior-- thereby establishing themselves as the brilliant experts whose dx shouldn't be questioned. This would be pretty consistent with the posturing seen from them in their media appearances: calling Dr T's abilities and motives into question, the constant name dropping (e.g.; Swedo, as well as the institutional: Harvard), pointing out (repetitively) that all of these highly-trained, top experts agree with them, trying to make it seem they are in a different league of docs (academic, reputable, etc.), the fact that they even keep appearing. If they, and the families, are confident in the dx and treatments-- why not just hole up and DO it and let the rest of the public speculation, etc. play out on its own? If media attention is bad for these patients, why keep talking about them on TV? Why make suggestions about their "denial" and secret connections, traumas, family issues, etc. so the public can speculate even more about their private lives and things that didn't have to be brought into the spotlight? This is true for their patients, as well as the girls who are not their patients. Doctors going to the media and accusing ill, ADOLESCENT girls who are not their patients of "malingering" and bullying, and commenting that they've had traumatic experiences, bringing up their appointment scheduling history with Dent, that their fathers who speak to the media are "estranged," etc. is just unacceptable behavior (to heck with "first do no harm" right-- these are the patients who either wouldn't see them or questioned their dx, so they're going to take them down). Sorry-- this spins off of this particular interview to the quotes from the M&Ms in articles in the Post and Mail, etc. This thing still just boils me whenever I think about it! Even if the CD dx is (real &) appropriate, these docs' behavior is just unprofessional. And contemptible, really.

LOL Yes, I do know how that goes! But, it's interesting that even though our kids present with all sorts of unusual symptoms the docs can't explain and/or haven't seen before-- if we come here and post, sure enough someone else will report the same in their child. I've sort of dubbed my family the "anofamily," but if we're anomalies, at least we're in good company

The strangest thing has happened in the past week with my ds's "keratosis pilaris." He's been on Clinda while we await IVIG b/c he has strep he can't seem to clear and whenever he goes off the strep returns and he goes into exacerbation (he also has immune deficiencies). He gets perianal strep rashes-- usually my first indication it's back. One day last week his OCD shot up again (or farther up, he was already flaring from a virus in Jan). That night, he tells me his bottom is bothering him again and sure enough- there's the trademark rash even though he's still taking his abx. So we go into the ped and she is sure it's the strep returning, too, so she looked up what the treatment options are for resistant strep and added a second abx-- cephalexin (the docs are getting his IVIG setup and authorized now so she wanted to treat the strep while that all takes place). Well, since he began taking the cephalexin last week, his "KP" has almost entirely cleared up! There were still just a few little bumps left yesterday and I forgot to check today. Nothing else is different to explain it. Also-- this is really weird- has anyone else's child gotten flaky scalp? Ds has had it during this period of escalation. It's sort of like cradle cap, but ds is 7. Doc thought it was not fungal based on its appearance, but gave us the Rx shampoo in case. And it doesn't look like typical SD, but who knows... IAs for the gallery of mysterious markings... I've got so many rash pictures I could probably fill it myself! I always document the rashes to show docs. If we really want to establish a pic database I'd be happy to set one up somewhere. I wonder if we should have some sort of "parents library" hosted on another server so we have a place to upload, store, and maintain shared info and resources. I could do that, too if the community wanted it-- web design/development is part of my field. I wouldn't want anything that would compete with or distract/detract from this forum, though, so it'd really have to be like a library or resource/research space-- no talking allowed! MomtoJake-- I'd love to hear what the specialists you see make of the not-KP bumps.

Hi Scossio, Both of my PANS kids have urinary urgency/frequency and they have enuresis/urge incontinence when in a flare. However, these go away with the rest of their symptoms when they are not in exacerbation. The fact that your ds's are sticking around when other symptoms abate might warrant some further investigation. Some things you might consider: -ask your ped to do a simple urine test for a UTI. Getting accurate results for boys is apparently a challenge. I've been told that if it's not clean catch you can't trust the results at all. If it is a clean catch sample (meaning the area is cleansed with those little wipes right before collection) and it is positive then I think I was told they'd want to run a second clean catch. From there they'd have to decide how to proceed with either treating for UTI despite some uncertainty or further testing-- apparently the only way to get a really good sample from boys is catheterization. I gather UTIs in boys are relatively rare and may be dx'd and treated more than they actually occur because of the difficulty in testing. But, if your ds is on abx, maybe it's not an issue. -definitely, if you see a PANDAS doc (sorry I can't remember), ask the doc about this. -Is your child on any medications? Before we knew our dd had PANDAS she was being treated for a bunch of conditions based on her symptoms. She was put on SSRIs for her OCD. She also took Zyrtec for allergies. When the urinary issues came up we learned through our then-doc that both SSRIs and Zyrtec can have these issues as a side effect (and so it was attributed to that and they switched meds to no avail). This being a side effect of some allergy medications was also confirmed by a different allergist we saw for ds-- who said yes it can be a side effect and that Zyrtec effects the CNS and he recommended Claritin (which apparently is better CNS-wise), but only if really needed, b/c of that. So, if your child does take medications or supplements it may be worth some google searching of the drug name +enuresis or +urinary HTH

There are so many things wrong and offensive in this-- and not things I can dismiss as the Post. It's what Mechtler is quoted as saying. I hope some of the families of Dr T's patients threaten him with slander to shut him up about their children and families. See this excerpt: "Today, the neurologic and psychiatric communities agree that conversion disorder in teen girls is brought on by emotional and psychological trauma, with sexual abuse typically the prime trigger. Then there is the possibility that some of these girls are malingerers, deliberately faking their symptoms for money or attention. On the former point, Dr. Mechtler is circumspect. “I have to be very cautious in what I say. These girls have gone to the media and said they have no stress. These girls would be in denial. They have had significant emotional and psychological issues above and beyond what teenage girls are normally subject to.” Mechtler says the parents who remain the most vocal in the media about their girls’ ordeals have never come to a doctor’s visit. “The parents who’ve never come in are fathers who are estranged,” he says. Still, the girls who are in his and McVige’s care are improving, in large part because the doctors made them pull down their Facebook pages and YouTube videos (Brownell is the most recent deposted), banned them from texting, and pulled them out of school due to bullying — not from other students, but from the four girls who are not in his care, who he believes may be malingerers. “My patients are literally being terrorized,” he says. “They’ll say to the girls, ‘You never had it, and that’s why you’re getting better.’ ” " Talk about bullying!

Thanks for your well wishes and Carol, thanks for the resource and tips. I'm feeling much better this morning.

Here's my 2 cents about the PANS docs... Dr T is a clinician. And he's been an academic and yes he researches-- but he does so through the lens of clinical practice: What is he seeing most consistently in the kids he treats? What's working for them? What's not? How come? What's the underlying biological mechanism responsible for what he's finding as a treating doctor and how can that knowledge be used to treat them better or more effectively? His passion and interest lies in working directly with patients and using his training, expertise, and skills to diagnose and treat those patients-- including breaking ground and thinking outside of the box if the end result will benefit his patients, as well as other doctors and their patients. You could think of it as: his profession is medical doctor, his occupation (how he pays the bills) is MD clinical practice-- treating patients. For him, career success would most likely be measured by his skill in treating patients, the outcomes for those he treats, and probably how his discoveries and methods are adopted in the practices of others in the field. Swedo is a medical doctor by profession and her occupation is medical researcher (government employed). She's a medical scientist who researches the causes and treatments of neuropsychiatric illnesses in a research lab context-- she explores theories, tests hypotheses, synthesizes information, conducts clinical trials, publishes medical-scientific papers, etc. She also has to secure funding, navigate the bureaucratic structure in order to support and advance the work, etc. There will be politics in anything that involves people or groups of people and their beliefs, ideals, or money. There are more politics in play in things that involve governments, money, and politicians. Swedo's role in PANS, beyond her initial discovery, is to continue her research and work on the administrative and political fronts to secure its place in medicine, continue to investigate its etiology, provide evidence for its existing treatments, and further research other possibilities. She may be a scientist first, but she also has to act like a politician would to advance a cause. She may care about the kids with PANS as much as the docs who treat PANS in clinical practice, but remember, too, that her career success is measured by the reach and impact of her research and publications. Taking a step away from our vantage as PANS parents-- we can also see that Swedo's professional reputation and her value/mark as a medical researcher depend on defining PANS and its treatments and securing its place in medicine. This doesn't automatically conflict with serving the best interests or most immediate needs of the children who have PANS, but sometimes it might. I think Swedo/NIMH could do more more to make things better for patients now, but they seem only to be working behind the current to provide evidence for what they already know/believe so the medical community will know/believe it, too. And PANS is Swedo's discovery, so her reputation and professional worth are tied to its recognition and acceptance. I personally have a problem with her (perceived) ownership of it. She's really not the final word. She found it, but others are the ones in the trenches and actively addressing it now. NIMH and the public, media and other health professionals need to look beyond Swedo and her work. The PANS docs in clinical practice are the ones who are going to be most attuned to its various presentations and nuances. I'd put more stock into the opinion of someone who evaluates, diagnoses, and treats many PANS patients than I would in someone who works in a more hands-off way in a research setting and whose criteria are developed and implemented in order to further the cause, not help the individual patients (in the short term while she advances the medical status of PANS- the illness/condition). I'm not suggesting Swedo's aims are just selfish/career-driven. She is clearly passionate about her work and without her so many of our children would still be misdiagnosed and suffering. Her research should serve many kids like ours in the long run. She really has to operate the way she does in order to accomplish the goal of securing PANS' place in medical science and practice. Because of this she should not be seen as the final word when it comes to actual patients and individual (or small groups of) patients. It doesn't matter what she really believes or knows if publicly expressing it could undermine that goal. Her objective right now is simply to advance the case of PANS and we need her to, as Tim Gunn would say, carry on and make it work. Also I'd suspect a lot of politics are in play re: LeRoy. Swedo's a gov't researcher, there are also gov't CD researchers involved, and there are probably myriad other factors and considerations behind the scenes. She needs her position, she needs to maintain favorable relationships, and she needs to continue to receive funding for her work. When it comes to the LeRoy situation, I could imagine multiple scenarios in which those things could be threatened. Anyway, I'm sorry if this is type ridden or only partially coherent--I'm sick with a sinus infection and virus on top. Between that and the meds, I'm done and I'm taking my own cue and going to bed now edited to clarify and complete a half-written sentence

Hi Denise, My ds was recently dx'd with an immune deficiency. He also has low IgG in subclass 1, too. Wonder if there are any trends with the specific subclass that our PANS kids are lowest in? Since the majority of IgG is made up of the IgG1 subclass, frequently those with low subclass 1 are low overall (or may eek up to low normal if another subclass is high-- this has happened to my ds with a very high subclass 4) . IgG 1 usually reaches its full, or adult, level in early childhood-- our immuno said that by 7 (ds's age) it should be there so deficiencies would not be developmental (I'm pretty sure it was subclass 4 that she said comes later). My ds is also deficient in IgM-- his levels fluctuate between entirely absent and barely there but detectable and that also should be at adult levels by now. He also has specific antibody deficiencies and she said at 7 he should hit protective levels from vax. Now, we know there's a high likelihood that ds's deficiencies will persist b/c when my dh was having blood drawn at his physical we had the doc run all of the usual PANS tests and b/c he gets slammed by illnesses and we knew about ds's deficiencies we had them run his panel and he's IgM deficient, too. They didn't run labs for subclasses or SAD so I don't know if those are low, too. Anyway, the immuno said that ds is past the age he should have adult levels AND his dad has some of the same deficiency so his would be considered likely to persist and he may need ongoing IVIG treatments b/c we need to give him passive immunity. The reason I bring up the likelihood of persistence w/ ds is not to worry you. I found out through all of this that insurance companies often factor the likelihood that the child's deficiency will persist over time into the coverage decisions. In other words, it makes a stronger case for coverage if it seems like the deficiency is not developmental or due to some acute causal factor. So our immuno said the fact that dh also has an immune deficiency would make a strong case when requesting coverage for ongoing treatments. Our docs said it is possible that down the road, once his PANS is treated and he's doing well, he may be able to try going down from the HDIVIG to the usual Immune Deficiency protocol as long as it continued to work for him. Two of the options were the regular dose IVIG and depending on his circumstances there's also the subcutaneous. So sorry your dd is having such a rough year, especially after she'd just gotten back in her groove and was doing so well! Please let her know my dd says hello and sends her best wishes. We're thinking of you all!

More support and good, hopeful thoughts coming your way from here. TH

Just saw this: some private youth league basketball games have been canceled b/c parents of kids from other teams wouldn't send their kids to NY to play. So the LeRoy School District made a statement assuring everyone there's nothing to worry about: It states: The NY Dept of Health has stated "repeatedly and unequivocally that the school is safe for students and visitors." AND: "There is absolutely no reason to keep students from attending events at the school. Several of the affected students are better and others are getting better." AND: "We credit the responsible journalists at WGRZ-TV, the Buffalo News, and other local outlets in the region with factual reporting in helping the community to better understand the topic." article here So several of the students who had CD are already better? Why haven't we heard this on the news? And why no word about the success of their treatments from the CD god and goddess at Dent? Surely successful treatment (using whatever methods a Neurologist might use to treat someone who has a psychological, stress-driven condition) would do a lot to confirm their dx, right? Plus Dr CD is a walking ego I can't imagine he would not mention that some of their patients symptoms have fully resolved along with his multiple mentions of the girls their care who are getting better... And thanks to the "responsible" journalists for their "factual" reporting? I'll save the rant on that one b/c it's so obvious... but I do wonder if they'll retract that statement down the road when some students are confirmed to have something other than CD. Way I look at it there are two sets of treating physicians right now-- both fully credentialed-- and there are two diagnoses on the table, neither fully proven or disproven at this point. Factual ought to reflect that. Dent hasn't even seen all of the kids so how can their dx be responsibly reported as valid for every kid?

Since when has Fox been credible? For anything?

As far as the outbreak Dr L has noticed in the Richmond area I think it can be explained by two factors: 1) Richmond, and the area surrounding it, has a particularly nasty strain of strep. It's apparently hard hitting and tenacious-- very hard to clear. This has been true for us and a few others we know. Dr L said she's seen a lot of this type of strep from this area and our peds have said that's consistent with what they're seeing, as well. 2) I just saw our ped who told me that working with us she's learned so much more about PANS that she is now helping other docs in the practice with it and everyone's more aware, so they are now catching it right off the bat. Now they're also starting to re-evaluate kids in the practice who've been dx'd with other things but who may fit the PANS profile (both of my kids were misdx'd with other things that turned out to be PANS prior to starting with this ped). She told me they've now sent at least a half dozen other kids to Dr L.. Apparently they also have labs out on more kids, plus there are the kids they're starting to take another look at-- so I expect the stream of patients from this area will continue. Also, our dd's CBT therapist who treated her when we thought she had non-PANS OCD also ended up with more awareness re: PANS b/c of dd and she ended up calling me to find out who our PANS doc is b/c she wanted to make a referral. So, it seems that there are a lot of PANS cases springing up here, and maybe it is b/c we're a hot spot for this terrier of a strep strain, and it also seems like Dr L is getting a lot of referrals just from our peds practice. And I'm sure she gets them from other docs in the region, too-- she already had patients from this area when we began seeing her. It's been said (to me) by several docs that it would make sense for there to be clusters in outbreaks b/c of the ARF/strain reasoning that's been discussed. If we're in a nasty strep/PANS prone region, at least we're fortunate to have Dr L in close range!

Me three.

Ugh. It was so gross! I had to run to the pharmacy right afterward so didn't get a chance to post an update. The video of it posted here I tried getting our questions in but there was a lag and either some submissions weren't being registered or they may have been screening them because a lot of what I submitted didn't appear in the chat window and were not presented to them. I did get at least one of EA Mom's questions about SC through-- but I was annoyed b/c she didn't read them the whole thing and left some of the more important things they should have had to address out. Interestingly, Dr CD said that Swedo said he can share that she consulted with him on the case and does not believe it is PANDAS but b/c of her job at NIMH she cannot comment on their dx. Hmmm... He also said that PANS has a very active internet community. They came across as condescending and misinformed. They were basically just posturing. I still think Mechtler comes off as a sociopath/personality disordered. TH

Hi Amy, I am on the run this am, so am going to cheat in my reply and refer you to a previous discussion thread I'd started about this: link to post Quickly, though, I will say that my dd wouldn't be able to perform well on anything that's facts recall related, and most especially with a timed component-- between the recall issues and the anxiety such quizzes can elicit. Plus there are probably many problems on the page which is overwhelming/has its own set of challenges. I'd see if you can get the teacher to remove the timed quizzing and find alternative ways to address facts. If s/he won't- go for a 504. PM me if you want more info. I'll be back online later today. TH

Saw that Drs CD and McV will be online for a live video chat tomorrow. The news site hosting it states "The chat provides you an opportunity to pose your questions." I have many questions I'd like to ask them so I plan to attend. And maybe I'll load the chat on every computer in the house and will give the kids and dh questions to submit. If only the dog could type, too... Would be great for the PANS community to represent... the more the merrier I say! Link to Info

Just saw this Lyme Disease Risk Map-- pinpoints areas of country where it is the greatest threat. Thought some here may be interested... See it here